2 Year Cancer Scan

We are very excited to share that Max received another good report after his scan.   The report read “No new evidence of Neuroblastoma”.   He did great during todays tests, and he had lots of fun playing Santa and visiting all the dear providers that take such good care of our family.

The Oncologist reviewed all the reports with me today and we had a reflective moment as we looked back on the last 2 years of Max’s life.   He has come a long way in these last two years and has fought hard, we are so thankful for the Lord’s provisions and strength to see us all through. 

 
We are having great success with this new protocol to help his autoimmune disease that he developed from the Cancer.  He is taking high dose pulses of steroids one week a month while we are trying to decrease his daily steroid doses. He is getting pretty sick to his stomach while on the meds, but overall it is making life better.  We are scheduled to drop his evening dose starting on Christmas Eve and we will be back to the place we were at last year when he had his relapse.  You could join us in prayer that as we drop his dose of meds he won’t show any signs of relapse.  The doctors are still not certain if he will need to do one more round of chemo to make sure we have reprogrammed all those attacking antibodies.  If we did do more chemo it would consists of 4-6 rounds once a week in January/February, and we would probably head back to Boston at that point.  If he sails through the holidays without any relapses, we could be in the clear and possibly looking at a surgery to remove his port in February and just maintaining the same treatment plan for the next year or so.  We are very hopeful for the best and appreciative of all the prayers!

Ready to get deaccessed and go home!

Life Saving Award - Kent City Council

It was a special evening at the November Kent City Council Meeting where Dad was able to publicly thank the police officers that saved my Mom’s life the morning she had her heart-attack.  Unfortunately Mom wasn’t well enough to attend the event but the Kent City Council and the Kent Police Department awarded these men with the prestigious life saving award.  The family was able to attend to show our appreciation and personally thank these heroes.  It was a very touching experience to thank these men and their families.  We are so grateful that these officers responded so fast and had an AED in their patrol car so that they could keep Mom alive until the Paramedics could step in.

 

Go Huskies!!

We have had such a fun season already! 

 

 

 

 

 

Too much excitement!

Boo!! - I Scare Cancer...

 

 

I apologize for my delays in blog updates, we have had a busy past couple months.  Max is doing really well and we are ready to start making some changes to his treatments.  We are getting close to the dose of steroids where he relapsed last year and would love a holiday season free of crisis, so we are trying to be proactive and establish a new game plan for the next few months.

 

Seattle Children's has dropped the clinical COG trial Max was originally a part of and we are exploring some other protocols.  It looks like the hospital will be adopting a popular European protocol, using Dexamethazone instead of Prednisone (which is a more potent steroid that has better effects crossing the blood brain barrier) and Rituxan (the chemo drug we used this spring) instead of Cytoxan (the chemo drug we used last year).   After consultation with a Pediatric Oncologist at Lucile Packard Children's at Stanford it seems there has been some luck with patients using a strong pulse dose of Dex for 3 days a month in hopes of transitioning off the dependance on the daily steroids. While there is no literature to back this up, it seems like a logical plan to try since we haven't had luck in the past with other protocols.  Max had a few sniffles after school started and rather than bumping up his Pred we opted to begin this new protocol.  It means a couple months of doubling up on steroids, which hopefully won't bring with it many new side effects or tough adjustments.   He started this past week and so far it hasn't been too bad.

 

We still have plans in the works to visit Boston soon, the travel clinic has taken a bit longer to establish than originally scheduled and we are hesitant to make the trip without all the specialists on board, we would hate to make a trip now and then need another trip in a couple months. The main neuro-immunologist has been great about communicating and discussing treatment options by email and conference calls.  Insurance is still busy trying to take care of all the approvals through the medical director and we are still trying to make sure we have all of our counterparts in place here in Seattle to be able to receive information and treatment plans from these other specialists.

 

Max still continues to be seen by PT, OT and Speech Therapists weekly through Children's Hospital to help us watch for fluctuating symptoms as we change his meds. Its been trickier to get him scheduled for all his various appointments now that he is attending school, the last time I pulled him out of school he just grumped all day and refused to comply with the drs because he was so bummed about missing his class, so we are trying our best to take care of everything after school which makes for some long days for little Max.

 

Max has continued to not show any growth in height or weight this year again and is falling farther off the charts, he now has the medical diagnosis needed to begin daily injections of growth hormones which we have been encouraged to discuss now, with the hope that he would begin them within the next 3 months. We are seeking some more opinions and needing to do more research on this risky addition to his treatment. We really would like to hold off until after our next round of scans to make this decision.

 

Thanks for all your continued prayers, we are so excited that he is doing so well, a little nervous about changing things, but hopeful that God has it all under control. 

 

Tinkerbell Premier

Make-A-Wish invited our family and friends to attend Seattle's Premiere of the new Tinkerbell Movie, where Tinkerbell finds her long lost Sister.  Radio Disney was there with lots of goodies and games and the kids all had fun checking out this new 3D movie. 

 

 

Busses and Best Friends

Waiting for the School Bus

   It hasn't taken long for the kids and Mom and Dad to get settled in at a new school. They love going everyday. Big Smiles, Waves, and Kisses can be seen as the bus drives away. However, all that extra time that Mom was hoping for has already been used up by volunteering in the classrooms, attending field trips, PTA, and other school projects. Dad is also involved as a Camelot WatchDog (Dads of Great Students). All the kids have quickly made new friends and are loving their teachers and learning so much!

 

 

 

Having Fun in Miss Jessie's Class

 

 

 

Madison's New Best Friend, Aislyn

 

Update on Mom

Mom suffered a cardiac arrest on August 28th early in the morning, my super hero dad was right there to provide CPR until proper medical attention arrived.  She arrived at Valley Medical Center unresponsive and they worked hard to save her. She remained on the breathing tube for several days while they cooled her body temperature down to help her body heal. After warming her up she quickly perked up and was in the ICU and hospital one week before she was fighting to come home.  She is at home now resting comfortably. She has home health services with Visiting Nurses, Occupational Therapy, Physical Therapy, and Speech to help with her memory.  It seems that her breast cancer that had spread to her bones, may also be spreading to her brain.   She will begin radiation treatment on her entire brain this week.  Thank you to all who so diligently prayed for her and for our family during this critical time.  Clearly God still has big plans for her.

First Day of School

 First Day of Kindergarten and Preschool

Molly's Surgery

 

We have had a really fun and busy summer and now we have to get back to business and get things taken care of before the school year starts. This time Molly got to go to the hospital to get her tonsils and adenoids out.  After a year of battling breathing issues, inhalers, crazy loud snoring, and infections, the surgeon and ENT took one look at her mouth and said we need to get these out right away.  No xrays and tests needed they could see the problem areas by just looking in her mouth. 

 

So after much coaxing and prepping on what was going to happen Molly reluctantly/cheerfully? made it to the hospial with us.  Molly is a much more sensitive patient, she refuses to watch Max have any procedures or pokes done and will polietly sit outside his room, bury her face and cry, Max will look at her like she is crazy and tell her to stop crying.  So this time we assured her that there wouldn't be any pokes for Molly and she thought it was pretty cool that it was her turn to go to the hospital all be herself with mom and dad.  She did really well  until we hit the bright lights of the sterile bright operating room full of lots of masked medical professionals and then she lost it.  Luckily we got to have one of my favorite pediatric anesthesiologists and she knew just what to do.  We covered her face with her favorite blankie so she couldn't see anything and then she turned on the gas and started pumping it through her blankie,  she knew Molly was a candy lover and pumped candy flavored gas through her blanket until we got her knocked out. 

 

Surgery went great, although she had a tough time waking up from the anesthesia they paged me in to the OR to find a highly comabative little girl with three men trying to hold her down and keep her from hurting herself and others, after big hugs from mom and two rounds of extra sedation we made it to recovery where Josh got to take over.

with her history of breathing problems they had asked that we spend the night for observation which normally isn't needed but they wanted to be on the safe side due to her history.  Although in the end once the tonsils were out, her airways were so much bigger and with the added sedation they felt comfortable sending her home in our care knowing she would be flying pretty high for the next 24 hours and trusting that we knew the warning signs of what to watch for. We promised to sleep with her and keep a very close eye on her and we got to go home, with instructions on how to handle the 3 different pain medications and dosing instructions for every 2-3 hours round the clock.  

 

Upon arriving home,  her first 24 hours went really well, with only a couple episodes of vomitting she even managed a few smiles while opening some of her surgery presents from family.  The doctors prepared us that the recovery takes awhile and generally gets worse before it gets better.  They asked that she be out of all activities for 2 weeks, days 3-5 were definately worse when the incisions began to scab over and were painful and itchy.  She would cough and rip the scabs off causing some bleeding, but she did really well as long as we kept up on all the pain meds, she was a pretty cuddly little patient and forced mom to take a break and enjoy some snuggles.

 

 

Blue Angels Meet and Greet

 

Make-A-Wish had a special event during Seafair for the Blue Angels and they invited a select few families to join them in the VIP section on Boeing Field which is usually just reserved for special guests and family of the pilots. 

 

We got to watch the pilots get the planes ready and take off for the show and then when they landed we were escorted to their planes and they got out and walked right over to us on the runway.  The pilots came over and greeted us, took pictures with us, answered all our questions and signed autographs for the kids.  What a cool day!

 

This truly was a once in a lifetime experience. Max had a blast and I can only imagine how cool this would have been had he been a little older to know what a unique opportunity this was, he will some day and in the meantime it was super fun for Mom and Dad!

A big thanks to our very favorite Make-A-Wish volunteers for such a fun day and for the cd of pictures to help us all remember this awesome day!

Spokane

 

Josh had a lot of work to do in Spokane this summer and so we decided this week to take the whole family, so while Dad worked hard we got to do lots of fun stuff.  We got to use our world passport from Give Kids the World to visit Silverwood one day.  I also enrolled Madison in art camp for the week at the local children's museum and Mom and the twins got to have lots of fun getting all our back to school shopping done, story times at the library, playing at the park, and lots of bike riding the fabulous trails all along the Spokane River.  Madison and I would ride our bikes to class every day with the twins in tow and then we of course had to enjoy the amazing sun and hang out by the great pool that had a really cool waterslide and kids pool where Mom could sit back and (kinda) relax while they enjoyed the water.

Beads of Courage Fun Run

Max got to participate in a fun day supporting the Beads of Courage Program at Seattle Children's Hospital.

He greeted the race participants and got to show off his amazing bead collection. The founder and executive director of Beads of Courage was there to kick off the program and highlighted Max and all the beads he has earned in a brief presentation prior to the race starting.

We all participated in the 1 mile family fun run and the twins joined me in the stroller as we completed the 5k. It was such a joy to watch Max run with such determination and pride, with the crowds cheering him on.  Little did they know what a miracle it is to see him running so well!

 We all earned our own necklaces and received a shuttle bead that was a symbol of the beads of courage the astronauts took up to space in the last shuttle mission.

 

A big thanks to the nurses and staff of Seattle Children's Hospital that are so dilligent in taking care of the whole child and the family of those dealing with serious illnesses. Max was excited to share his story of courage and hope in a tangible way by sharing his beads with everyone.  Also a big thanks to the Beads of Courage staff and the Baruch family for travelling to Seattle and all their hardwork and enthusiasm.

Beads of Courage kids and siblings

Jean Baruch, Executive Director and Founder of Beads of Courage